Doreen Cummings is the Director of Services for Mainstay Supportive Housing. This series explores different topics related to finding the right supportive housing for your loved one with intellectual or developmental disabilities. This interview has been edited for length and clarity.
What do you advise families with multiple siblings regarding how the siblings can help to find a supportive home?
Siblings are super important members of the family when you have a member with a disability. The sibling is the longest lasting relationship in the family. It’s inevitable that the sibling will play a role in what the future of a brother or sister with a disability will look like.
There are some great groups out there like (the siblings support project) Sibshops, where they bring all types of people together to talk about what it’s like to have a sibling with a disability. It is a great program for younger siblings.
When your teen starts to have that dialogue about what happens to my brother or sister when my parents are older or not here anymore, honesty is the best policy. I often run into family members and parents who don’t want to burden the sibling with the care of their brother or sister with the disability. I feel preparing the sibling, and not sheltering them from what that will look like, is important.
Trying to nurture that relationship is important, and focusing on the good nature of the relationship is important. The families that do the best have siblings that get along, and have parents there to nurture that relationship, so they will be able to get along long term.
As far as guardianship goes, there is a caveat I want to point out. Often families are led to get guardianship for their child with a disability when they turn 18, but that guardianship can eliminate some benefits. If both parents are guardians, you can’t tap into the family care benefit. I advise if you have sibling over the age of 18, make them a silent guardian on paper so you can tap into the other benefits that are out there.
Adding them as a guardian also gives them buy-in for what they are going to be doing in the future. They should be in the loop, so they are knowledgeable about what the parents’ dreams are and what happens when there is an emergency
Giving care to someone with a disability is very inter-generational. Think about grandkids or the siblings’ kids – the nieces and nephews – as they will take care of all the adult siblings as they age, and think about building a circle where everyone takes on a little bit of the care and that person is surrounded with support.
How do you advise people have conversations with other siblings about their brother or sister who has the disability?
It goes back to honesty, and having it always be part of the family life—this is who this person is in our life. They are perfect just the way they are; they have different needs than some other people have. This is how we function as a family and these are the responsibilities of the family. They are not alone, and there is support.
Tap into that circle of support, so all the burden is not falling on one human. I think it is important to be very honest, open and upfront when the kids are little about the different abilities their brother or sister. Have open and honest conversations when those teens ask questions and get inquisitive about what the future is going to look like.
If that child is an only child, would you advise having those questions with aunts and uncles?
It can be hard for family members to ask other family members for help. They think, “I don’t want to burden that family member. I have some shame and embarrassment asking for help. I want our business to remain our business.”
Work needs to be done to make sure you are setting up help for your loved one.
In extreme cases, I might say, “There are these three families that have these awesome siblings and maybe there’s a way to build a connection with another family.” Or look at whether they can hire someone as a guardian. Sometimes it means considering friends in the community or at church. There is usually someone willing to help…There is a lot of honor that comes when being asked to help.